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gary

Really Need Help

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I could really use some help. I wrote in not too long ago about my symptoms because I can't seem to figure out what is wrong with me and my friend suggested I might have Celiac's. For over 2 years now I've been having problems where all the sudden my bowels seem to close off and I can't pass anything through. It is very painful and it takes weeks for things to return to normal. I've had all kinds of tests because doctors said it might be crohn's, ect. All tests returned negative. I've been trying the whole gluten-free thing for about 3 weeks or so, I continue to find different sources as I go along where gluten might be creeping into my diet (things with food-coloring, barbeque sauce, ect) the problem is that I'm still having these problems and I don't see any correlation to when I ate the foods if that really is the cause. Plus, I'm eating them at such low quantities if that's the case, but I don't konw what else my problem could be. I just recently got married and so I no longer have insurance and can't continue to do tests, however, if this enterolab thing is as great as everybody says it is I would be willing to scrape together the money. Does anyone know how much it would run for someone without insurance? I don't know what else to do because I've been doing this for about 3 weeks now and not feeling much better? I guess I'm just kind of freaking out and need to stick with it to see what happens. But if anyone had similar symptoms or any suggestions please reply. Thank you in advance for any help.

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Hi Gary,

To really determine whether gluten is your problem or not you will need to eliminate it completely. Even small amounts here and there will prevent you from improving. I would recommend spending some time on this site to learn more about the ingredients that could indicate gluten in a product. Learning to read labels is crucial. There are so many ways to still get gluten into your system even if you're eating the right foods. For example do you toast gluten-free bread in the same toaster that you used for regular bread? Do you use the same peanut butter, jam, butter that other people in your home use? These are all sources of contamination and you would need to have your own to avoid small amounts of gluten getting into your food.

If money is tight I would suggest getting really strict about the diet....its really the best test of all. I had Enterolab testing.... I paid $350 for everything including gene testing. I'm pretty sure you can just get the Anti-gliadin IgA test byitself for around $99.

Good luck and welcome to the board. :)


Rachel

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Hi and welcome.

I found that cutting out gluten was not enough to resolve my issues and that it also took cutting out dairy. It took a little while but I am now having regular bowel movements and my digestion has improved. I think I may have had similar experiences to yours, I thought of it as a spastic colon because it just seemed to seize up. I also find chocolate can be a bit of a problem.

I don't think that the gluten and dairy intolerance are my only problems but cutting them out has improved my condition be about fifty percent.

Are you eating dairy?


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Thank you for your replies,

Yes I've tried to cut out everything that has any wheat or dairy of any kind but I have still been eating everything else (a lot of soy, nuts, meats, ect.) so I could find out if it is the wheat that is causing it or not. I was using the same toaster as my wife, but since I've continued to have problems, i have stopped doing that just a week ago or so. I use shampoo and conditioner taht has food coloring in it and from what I understand companies often use wheat in their food coloring. Has anyone ever gotten glutened by shampoo or conditioner. Also it might just be me but I could swear that any kind of fake sugar (sucrose, sacharin, ect.) has been the cause of time of my symptoms and I looked at my toothpaste and mouthwash and they both had one of those types, I can't remember which one, so I think I'll avoid that, does anyone use a special kind of toothpaste? Or does anyone else have sensitivities to fake sugars? I saw someone else on this site talking about salilcylates or something like that and HOw alot of celiac's have to avoid them, can anyone tell me what that is? The $300 dollars for enterolab isn't that bad, I'm considering going in next week for allergy testing because I can't seem to figure things out myself, that testing without insurance will cost me $400-$500 dollars they told me. How does the enterolab thing work, do I need a doctor to order it for me? Once again thank you so much for your replies and any other information anyone can give me would be much appreciated.

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Hi & welcome

Feeling better after no wheat or gluten ususally doesn't happen overnight,, it will take time for most to notice a difference. Plus you need to be very strict about the diet --- alittle bit is the same as alot.

Also you said you eat alot of nuts, that's a big allergen for tons of people.

Since you are having many problems with many items may I suggest you limit you rfoods to maybe fresh fish (not farmed raised) maybe a little chicken , brown rice, no dairy,gluten-free broths , & a little jello . I know this sounds pretty bland but it might get you on a faster track. Since you could be having reactions to just about anything. I know some stay away from shampoos & etc. - I have heard both ways that it doesn't matter & others stay it made a world of difference for them. One doctor says you must eat this stuff for it to cause damage & problems. But Know for myself some HBA items cause me to have headaches.

About the toaster I use toasta bags. they are bags you put your bread into & toast.I found mine at Boscov's.100 uses for $7.95.You could also be getting gluten from the butter dish too. Make sure pots & pans are washed & rinsed very well.

gluten hids everywhere,envelopes,communion wafers,wines,beers,glue,play dough & so on.

By eliminating foods & adding one new item back into your diet will help you figure out if its a problem for you.You should add one food item each week until you add all your favorites back in, this will help you know what you shouldn't eat.

This all is trial & error and it will take time. I figured for myself I probably didn't get this way overnight & I wouldn't get better overnight either. The road my friend may be a long one but I know you can do this. If only we had a magic bullet to fix our woes.....

This group has been the best knowledge I could ever recieve, doctors have no idea & this group is so far advanced of what doctors think they know or don't know.

blessings and good luck

mamaw

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Gary,

Soy is a KILLER for me..please to elliminate it also. I know it's so hard getting started but with TOTAL gluten-free,dairy and soy out of your diet you might find you'll start to feel better.

judy in philly


Judy in Southern CA

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Gary,

I went through enterolab in May and ordered everything they have. The full gluten panel is $369 which includes gene testing, IgA antibodies, ttg, and malabsorption, and dairy. I also ordered the soy, egg, and yeast which was another $199. My allergy testing was $550 I think, which didn't include the doctors fees. Enterolab is a stool test. They send you the kit, you send it back overnight. If you decide to order everything they order they don't charge you shipping. Don't know about the full gluten panel.

I am gluten, soy and dairy free. I am gluten and soy allergic and intolerant and dairy mildly allergic.

You might also need to consider taking something like Konsyl, which is a natural laxative and bulking remedy. It is gluten free. My husband takes that and needs to remain on it. He is also gluten, soy and dairy free. Taking those out of your diet may be the solution or you may need more help.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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I would definitely advise you to stick with this patiently for several months before you decide it is not helping you. I went gluten-free at the end of May & it took at least 6 weeks before I started noticing real changes. I also agree that starting with the purest diet you can manage, then adding in foods one by one when you feel better, is a better way to approach it than the way I began, which was to try all sorts of gluten-free products, almost compulsively, & bake lots of gluten-free treats-- for me it was like a psychological addiction, but I got it out of my system eventually, & I feel better now that I keep to a more whole-food diet most of the time. I had the opposite problem to yours, by the way, but it almost seems that the symptoms are random expressions of the gluten reaction, & whichever direction your digestion is going wrong, it evens out once the toxin is removed.

In our family, we have a toaster oven & I have a perforated tray that I use to make toast, &c. I avoid gluten containing lotions & so on because I think the possibility of accidentally ingesting some (touching my lips with my fingers, for example) is too high. If you don't already have Nini's newbie list, it will help you identify some of the hidden sources. I had some vitamins with gluten for instance... & sunscreen...

Nini's site: http://magickhand.googlepages.com/home

Good luck! It gets easier & is well worth the trouble. There is a wealth of information here & always someone who can answer your concerns.

Leah


The Queen of Hearts,

She made some tarts

All on a summer's day.

The Knave of Hearts,

He stole the tarts

And took them clean away.

Diagnosed at age 49 by biopsy 31 May 2006

Learning how to bake those tarts gluten-free!

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You really have to watch everything. I made myself sick from not checking my lip gloss. I really didn't think that deodorant could have possibly been a problem, then I switched to a gluten free brand - just in case. I felt so much better in a few weeks, I think it really was a part of the tiredness and headaches. So just watch all of your hygeine products.

Also check the controversial ingredients. There are a lot of things the seem to bother Celiacs, but are considered gluten free. Questions about distilled vinegar are on here at least once a month. Annatto can cause "D" and is gluten free.

Keep a food journal and you might find you are sensitive to other ingredients - not just gluten.

L


Michigan

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